Bone Mets Thread

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  • snow-drop
    snow-drop Member Posts: 563
    edited July 2021

    Jsniffs, yes it is one of the first line of treatments for stage 4, bone Mets. I diagnosed stage 4 at the beginning, second opinion MO proposed letrozole+ faslodex as first line of treatment. If I had this knowledge that I have now, I might’ve started l/f. Why don’t you try radiation (aggressive treatment) if you have a single bone met. Few ladies are in hormonal therapy for a good while for bone only metastatic.

  • JoynerL
    JoynerL Member Posts: 1,392
    edited July 2021

    jsniffs, I believe that some with oligometastasis have started with stereotactic body radiation (SBRT) in an effort to wipe out the cancer entirely while it is so limited in scope and location. You're fortunate to perhaps have that option, in addition to whatever other approach(es) your oncs recommend. Good luck!

    I had SBRT last year to address a worrisome periclavicular node, and it appears so far to have eliminated that problem.

  • jsniffs
    jsniffs Member Posts: 136
    edited July 2021

    Thanks everyone for the info. I've actually done SBRT twice now (for the initial spine met a couple of years ago and for the 2 spine mets that have popped up recently). I have to fix my signature....it got all messed up and I haven't gotten around to fixing it.

  • elenas401
    elenas401 Member Posts: 170
    edited July 2021

    This sounds promising. They are starting trials on solid tumors including breast cancer in different countries, hopefully soon in the US. They are using it on skin cancer and mets at Sloan Kettering Cancer in NYC. 100 % of tumors responded with 100% having a complete response.

    image

  • elenas401
    elenas401 Member Posts: 170
    edited July 2021

    I made a mistake on that last post on Alpha Dart. 100% responded, but it was 78% with a complete response, not 100%.

  • star2017
    star2017 Member Posts: 370
    edited July 2021

    Hi Jsniffs, I just noticed that like me you were diagnosed while pregnant. I hope you and your family are doing well, though I'm sorry that you're back here like me.


    I had my last radiation treatment today (15/15). I've already started fulvestrant. After a break and some bloodwork, I'll be starting Abemaciclib and Xgeva. Leg pain is pretty much gone (tho the couple days after my fulvestrant shot, there was a bit of an ache down my leg, not near the injection site). I'm still taking it easy and avoiding putting weight on my leg, but I do feel I need to figure out what kind of exercise I can do. I'm not a super-active person, but I can feel that this past month or two of reduced activity hasn't been good for me. I want to figure out what sort of exercises I can do safely.

  • jsniffs
    jsniffs Member Posts: 136
    edited July 2021

    Star - I'm sorry you are here as well. Hope your family is doing ok. My child turned 5! It's amazing to think she was in my belly when I started chemo. It kind of blows my mind.

    As far as easy exercises, I've found qigong (similar to tai chi) really helpful. I can do it even on days I don't feel like doing much. I even teach my own classes sometimes. However, two groups that offer more regular classes for free online are Spring Forest Qigong (daily practice on Facebook live) and Zakim Institute through Dana Farber.

  • buttonsmachine
    buttonsmachine Member Posts: 339
    edited July 2021

    star, regarding the ache down you leg after the Faslodex injection - it is possible for the nurses to hit your sciatic nerve if they do the injection in the wrong location, which can cause that kind of pain. I had that happen once. Every time I put weight on that leg I had pain going down my leg, and it took a month or two for my sciatic nerve to heal. Fortunately it did heal! After that I actually started marking the good/correct area to inject with a sharpie, as an extra measure of protection against nurses who don't know the best location. (Although again, most nurses do know.)

    I don't say that to scare you, but rather just to make you aware that it can be important to guide some nurses with the Faslodex injection. Most nurses at my center are good at it, but I think a few were not as experienced with it, and according to my MO there's a bit of a learning curve with giving that shot. I also found that it helps to just ask for whoever is best/most experienced at giving it.

    Just a few tips I learned while on Faslodex, in case it helps!

  • buttonsmachine
    buttonsmachine Member Posts: 339
    edited July 2021

    PS Definitely mention it to your MO, especially if the pain down your leg persists too. I did, and it was my MO who helped me understand about avoiding the sciatic nerve and where the injection should be given. Best wishes!

  • star2017
    star2017 Member Posts: 370
    edited July 2021

    buttonsmachine, Thank you! The nurses themselves always ask about how it feels and warned me about the nerve issue, so they are pretty careful. The ache was the same sort of dull ache toward the front of the thigh that the metastasis caused (before the radiation). I wonder if it's either just weakness in the bone after radiation or, what I think is more likely, some sort of temporary inflamation caused by the fulvestrant. The pain was gone after a couple days. I'll definitely mention it to the MO and the orthopedic oncologist.

  • forevermom10
    forevermom10 Member Posts: 3
    edited July 2021

    Hi everyone. I am new here but have been reading for months. Diagnosed de novo with 2 bone mets in my back in March. I am 59, ER+, Her2-. Ive had a PET scan, an MRI, and bone scan. Suspected bone mets right after I was diagnosed stage 2! My hope came crashing down pretty quick. I have 2 kids, 21 and 24. My husband is my rock through all of this.

    My question is regarding bone biopsy. Im having one on Friday. Has anyone had them to confirm previous scans? I’m very nervous and I will be under general anesthesia which is freaking me out. Should I go through with this invasive procedure even after scans suspect the mets? You are all so wonderful and I have gained SO MUCH knowledge these last few months.

    Dont know what I would do without you all.

    Blessings and healing to everyone.



  • star2017
    star2017 Member Posts: 370
    edited July 2021

    I had a bone biopsy after my MRI and CT scans showed concerning imaging. I was not under general anesthesia. Rather, I was sedated in the twilight state. I was mostly awake but dozed a little during and immediately after the procedure. The procedure was not a problem. No real pain beyond the numbing shot. My bone mets was causing me pain, and after the procedure I didn't notice more pain than before.

  • forevermom10
    forevermom10 Member Posts: 3
    edited July 2021

    thank you Star2017. I dont have any pain in my back other than my bulging discs and ongoing arthritis.

    Wish I could be awake for this, like you were. I have no idea why I’ll be put under. I’ll ask on Friday. Thank you so much again. Wishing you lots of healing x

  • snow-drop
    snow-drop Member Posts: 563
    edited July 2021

    forevermom, I diagnosed de novo as well, same story as yours. No bone biopsy for me though, since scan, bone scan and mri confirmed those lesions are Mets. See this thread: https://community.breastcancer.org/forum/8/topics/876918?page=28#idx_811

  • olma61
    olma61 Member Posts: 1,026
    edited July 2021

    I was deNovo, had a bone biopsy after a PET scan. Not only will it be used to confirm cancer, they will also test the ER-PR-HER2 bio markers because sometimes, metastatic tumors have different bio markers. That helps guide your treatment

  • sondraf
    sondraf Member Posts: 1,692
    edited July 2021

    de novo as well, but no bone biopsy. Confirmed through CT, MRI and bone scan. However, I had one sacral lesion causing serious pain so I guess that was pretty obvious what was going on. Not sure why they don't bone biopsy here (probably cost) for de novo, though I imagine if I didn't respond to hormone therapy that they would have done it then.

    Two spots isnt a bad deal though - you should join us on the de novo thread as there are some doctors who are challenging the conventional thinking around oliogo treatment (which you are).

  • JoynerL
    JoynerL Member Posts: 1,392
    edited July 2021

    Forever, I have had two bone marrow biopsies. They sound dreadful. They are not. The idea is so much worse then the procedure. I agree with what others have said: You are put into a twilight sort of mode with drugs similar to those used for colonoscopies. I would ask about the general anesthesia. I felt no pain, except for the emotional pain of anticipation. Try not to be afraid of the actual biopsy procedure. It provides valuable and important information for moving forward. Good luck!

  • star2017
    star2017 Member Posts: 370
    edited July 2021

    For me they needed to biopsy to confirm it was breast cancer (and not some new cancer) and that it had the same characteristics regarding estrogen, progesterone, and her2 as the primary. How do they develop the treatment plan without the biopsy?

  • sunshine99
    sunshine99 Member Posts: 2,723
    edited July 2021

    Forever, my bone biopsy was not bad either. The IV line was in place and when they took me back to the CT room, I had to turn onto my stomach and position my arms above my head. Then the nurse said, "Here's your party juice" and that's all I remember. It wasn't full anesthesia like for surgery, but more like the colonoscopy type, like others have said.

    I did have to stop the tech from placing the IV in my right arm (even though he had put a band on that wrist) and I had to tell both the tech and the doc that NO, you're not doing a bone MARROW biopsy, you're going to biopsy L4 or L5. All went well after the procedure. No nausea or real pain. Was able to dress myself, and then they wheeled me out the the parking area where my husband was waiting.

    All the best to you,

    Carol

  • forevermom10
    forevermom10 Member Posts: 3
    edited July 2021

    Thank you everyone for your responses . I really am nervous but know that I’m in good hands. I hope that I can continue with my current treatment as I am able to tolerate it so far. Next appt is with radiologist to talk about zapping the two spots.

    Today I spent most of the dat crying. In a normal summer, i would be decorating my deck or planning a little summer getaway. I am mourning my carefree future. I hope that one day it wont be this hard....

    Blessings and healing to everyone. X

  • star2017
    star2017 Member Posts: 370
    edited July 2021

    forevermom10, it's been just over a month since I got my diagnosis (and almost two months since this whole thing escalated to concerning), and I spent a lot of those first few weeks in tears. It's gotten easier already. It helps to have a path. I am scared, but I know that nothing is set in stone. There are many challenges, but also a lot we can do to improve the quality of the lives we do have. Hoping this journey is not too difficult, and that there are many hopeful and joyful days ahead for you.

  • sf-cakes
    sf-cakes Member Posts: 617
    edited July 2021

    Forevermom, I had to have a biopsy to confirm my spinal met, the MRI was "inconclusive but cannot rule out metastasis". And similarly, this was shortly after being diagnosed stage 2b, I was in shock. The biopsy went well, I was awake but not anxious due to IV meds, and the doctor did hit a nerve at one point - about 2 seconds of pain, but no other pain and no problems afterwards. Other than getting the phone call from my doctor confirming it was a met...that was much more painful.

    I cried so much at first, just could not believe it was happening so fast. I'm now about six months out from the MBC diagnosis, and my life is surprisingly relatively like it was before. I'm much more tired due to the meds, but I'm still working and doing yard work (just not for hours at a time like I used to). I know this can change at any time, and I do live my life in three-month chunks, from one scan to the next. Really hope your biopsy goes well and I'm sorry you're here, and glad you found this site - the people here have helped keep me sane many times in the past six months!

  • gailmary
    gailmary Member Posts: 528
    edited July 2021

    Jsniffs

    I've had a single met to head of femur found 4 years ago. 1st radiation for pain then letrezol, fulvestrant and ibrance and xgeva for the first year. At 1 yr had gallbladder out and stopped the ibrance. That was the plan anyways. Then another 18 months and dropped letrezol due to major insomnia. Since then just xgeva for bones and fulvestrant. Scans on Monday. A very painful 3 months with arthritis in neck and bulging disc/pinched nerve. Hoping once again that cancer is still sleeping in the femur. Dr always said he could add ibrance back in if tumor markers went up, which they have not. We don't know if mine are reliable indicators. I'll know next Thursday.

  • nicolerod
    nicolerod Member Posts: 2,877
    edited July 2021

    Well tomorrow is the PET and MRI of Liver but the MRI of C spine hit the My chart not good...looks like Afinitor failed...

    TECHNIQUE: Multiplanar, multisequence MR imaging of the cervical spine was

    performed before and after the intravenous injection of 5 cc of Gadavist.

    FINDINGS: There is progressive signal abnormality centered in the spinous

    process of C7, with more focal STIR hyperintensity that measures up to 8 mm

    AP. The findings are most consistent with progressive tumor in this region.

    There is new abnormal signal with enhancement involving the articular facet

    and pedicle of C7 on the left. No significant epidural tumor is identified.

    There is multilevel degenerative cervical spondylosis, as before. The

    cervical spinal cord is normal in caliber and signal intensity.

    There is a lesion in the T2 vertebral body which will be discussed on the

    concurrent thoracic spine MRI report.

    IMPRESSION:

    Disease progression, with interval enlargement of the C7

    spinous process lesion and a new lesion involving the articular facet and

    pedicle of C7 on the left.


    THIS is the T- spine...what is that t9 all about????!!!!!! I am really upset...


    COMPARISON: Prior thoracic spine MRI 07/09/2021

    TECHNIQUE: Multiplanar, multisequence MR imaging of the thoracic spine was

    performed before and after the intravenous injection of 5 cc of Gadavist.

    FINDINGS: New from the prior MRI examination, there is abnormal STIR

    hyperintensity and enhancement involving virtually entirety of the T3

    vertebral body which is consistent with progressive disease. There is

    minimal extraosseous extension, with epidural tumor ventrally that measures

    up to approximately 2 mm in thickness. There is no associated significant

    canal stenosis or cord compression.

    No additional worrisome thoracic lesions are identified. There is a small

    hemangioma involving the dorsal aspect of the T9 vertebral body, as before.

    The spinal canal is widely patent. There is prominence of the central canal

    of the thoracic spinal cord, without focal intramedullary lesion. There are

    hepatic lesions that are partially imaged and incompletely evaluated.

    IMPRESSION:

    There is a new metastatic focus replacing majority of the T3

    vertebral body. There is early canal compromise with minimal tumor

    extension into the ventral epidural space. The spinal canal remains patent.

  • olma61
    olma61 Member Posts: 1,026
    edited July 2021

    Nicole, just want to say I’m sorry to see this. Hugs

  • candy-678
    candy-678 Member Posts: 4,175
    edited July 2021

    Nicole- I posted to you on the Liver Thread. Again, I hate this for you.

    I do wonder how my bone mets are. I have a CT of chest and MRI of abdomen and pelvis as my scans. The CT chest will document "unchanged sclerotic areas seen in bone window". So, unchanged where they can see, but how about areas not visualized on these scans?? Cervical spine--- I have C2 mets, and my pubic bone where I have mets. So I could have progression of bone along with my small progression of my liver mets. Who knows.....

  • tinkerbell107
    tinkerbell107 Member Posts: 293
    edited July 2021

    Nicole: Forgive me for not recalling, but didn't you have radiation recently to your spine? Just shocked for you had recent imaging. I'll keep you in prayer...

  • nicolerod
    nicolerod Member Posts: 2,877
    edited July 2021

    Tink...I had radiation to the sacrum..and that is what is confusing me..the report looks like progression in sacrum which would mean the rads didn't work...but I have a ton of relief there??? well my MO just called...she thinks on the report where it mentions T2 might be a mistake and its just the T3 (that I had , and is worse) she said the sacrum could look bigger bc it was radiated and be dead. She is going to double check with the RO.

  • nicolerod
    nicolerod Member Posts: 2,877
    edited July 2021

    can lidocaine patches be used on spine the night before PET scan???

  • snow-drop
    snow-drop Member Posts: 563
    edited July 2021

    Nicole, I just wanted to say that my spine mri 4 months after radiation showed progression in new areas + radiated tumors got bigger + 2 lesions were seen in epidural space as big as 8mm. RO believed that those are “inflammation" and flaring (I guess). Thank god both my MO and RO were highly experienced so they didn't freak out like neuro oncologist (assistant professor tittle) did. I had to do mri every 6 weeks then 8 weeks then 3 months, so fed up with them, until things got stable, next mri in 6 months. Those nasty tumors get to be stable sooner or later (((hugs)))